Granted, I’m always talking to parents about hepatitis. Many of our families have children living with a chronic, viral hepatitis infection. Some parents have lost their child to such an infection. Treatment, treatment side effects, prevention, testing—these are all frequent topics at PKIDs.

But, to be with so many people representing organizations around the world hard at work on issues surrounding hepatitis, well, that’s why it felt like a homecoming.

For five days, volunteers were everywhere, eager to help and always smiling. Seriously, they smiled the entire time. And word has it, most of them were out of bed by three o’clock each morning so they could be in place, ready to serve when we arrived.

Let me just say, there’s only one cranky person in all of Glasgow. He drives a white cab and hangs out at the SECC in front of the river Clyde. Every other Glaswegian treats you like a favorite cousin come to visit for a spell.

And the WHA members! A nurse from Wales and a physician from Egypt talked collaboration over lunch on Thursday, an attendee from Botswana gave funding tips to a few Americans as they all lounged around waiting for a passageway door to be unlocked, and the man from Pakistan impressed everyone with his sparkly evening attire at the Kelvingrove Art Gallery and Museum dinner.

Three vignettes from the thousands of interactions that happened at the World Hepatitis Summit this year. All of the members were eager and ready to band together in the fight against hepatitis.

So what did we accomplish at this week-long event? We found out we’re not alone—that we’re actually part of a strong global network fighting to reduce and, one day, eliminate hepatitis B and C infections.

We found our voice, and by closing our many fists into one, we found that we are mighty.

We want to use this day to remind moms and dads that hepatitis is around and some of it can be prevented by vaccination.

Hepatitis C is a bloodborne virus that attacks the liver. It is not vaccine-preventable. If babies are infected it’s usually from their hepatitis C+ mothers or, and this is unlikely these days, from a blood transfusion. It’s unlikely because the screening process of donated blood is pretty darn thorough. But, germs have slipped through that screening process.

Teens and young adults may become infected, primarily through sharing of needles, sex with an HCV+ person, or sharing personal items such as razors or toothbrushes that may be contaminated with HCV.

There are effective treatments that work on a good portion of hepatitis C-infected children. But not on all infected children. Work is ongoing in this area.

Hepatitis C is frequently a chronic infection, meaning that if treatment is not effective, you will be infected for your lifetime.

Hepatitis A is vaccine-preventable. Normally, it’s passed person-to-person through the fecal-oral route, which is when something you eat or drink has been contaminated with hepatitis A+ poop. If you haven’t been vaccinated, chances are you will become infected.

This virus makes you feel lousy and can, rarely, do serious damage to the body. It does not become a chronic infection. It infects you and then goes away, like a cold virus.

Hepatitis B is vaccine-preventable. It’s transmitted in a lot of ways—mom to newborn, sharing needles or personal items, sex with an infected person, even household (nonsexual) contact. If a mom is aware of her infection prior to giving birth, shots can be given to the baby within 12 hours of birth that are effective at stopping tranmission of the virus from mom to baby. However, when babies are infected, almost half of them in the US will become chronically infected. In developing countries, that figure shoots up to 90 percent.

Today, despite the vaccine, approximately 1,000 babies become chronically infected with hepatitis B each year in the US. Many of the moms-to-be who are infected are unaware of their infection. Every pregnant woman should be tested for hepatitis B so that action can be taken at birth to prevent infection of the newborn.

Hepatitis D is an odd virus. You have to be infected with hepatitis B before you can get hepatitis D. It’s vaccine-preventable in that, if you get immunized against hepatitis B, you won’t be able to get hepatitis D.

Hepatitis E is similar to hepatitis A in the way it is transmitted—the fecal-oral route. It’s rarely a chronic infection. For most people, they get it, get sick, and get over it. It can however be dangerous for pregnant women, with a 10% – 30% fatality rate for this group. It’s not often found in the US but can be easily picked up in some other parts of the world.

That’s about it for hepatitis in the US. To prevent a hepatitis infection (and lots of other infections), wash your hands throughout the day, put barriers between yourself and another person’s blood or body fluid, and use the available vaccines. The trick is to do these things with everyone. It’s impossible to tell who is infected with what, most of the time, so the safest course of action is to assume everyone is infected with something and then act accordingly.

When babies are infected with hepatitis B, chances are they’ll stay infected for life. It becomes a chronic condition.

Some live long lives and their deaths are unrelated to their hep B infection.

Others develop cancer or their liver gives out. And then there are those who have minor symptoms, such as jaundice or fatigue.

You never know what or when or if something’s going to happen.

There’s no wonder drug for this disease. The available treatments are anemic at best, and few get favorable results.

My daughter, who was infected as an infant, has lived with hep B for 13 years. We’ve waited a long time for drugs that might work for her stage of the disease.

Hope has just peeked over the horizon.

NIH is running a clinical trial through a few centers in the US and Canada on children whose hep B infection is at a certain stage.

They’re using a combination of entecavir and pegylated interferon. They’re not looking for a cure, but rather hoping to slow it down. Even the best results wouldn’t remove the hep b virus from the cells. It’s integrated now, and there’s no work being done that’s close to getting it out of the cells it’s infected.

But, if the stars align and results are better than expected, it could be that those who respond to this treatment can relax, knowing hep B needn’t remain on their worry list.

That’s what we want. We all want our kids to live long, happy, healthy lives.

We flew to San Francisco yesterday for blood work and to sign forms. Lots of forms. Dr. Phil Rosenthal is running the trial and Shannon Fleck, the clinical research coordinator at UCSF Benioff Children’s Hospital, is assisting. I’ve known Phil for nearly 20 years and was delighted to see how optimistic he is about this drug combo.

This first step is to determine if my daughter is eligible for participation in the study. Her lab results have to match the criteria set for the trial.

If she is eligible, we fly back down within 30 days and her name goes into a computer, which then spits back out her placement. She’ll either be in the control group (no treatment) or the treatment group.

If she’s in the control group and the study is proving successful, she’ll be allowed compassionate use of the drugs, but that won’t be for two or three years.

That’s where we are—not even past the first hurdle.

I know people who’ve been infected with hep B in their adult years and have died from the disease. And I know people who’ve had cancer or liver transplants, or both—all because of this infection.

There are lots of ways to become infected. The easiest way to prevent infection is to get vaccinated. You, your siblings, your parents, your kids . . . ask your healthcare provider about it.

If hearing your child is infected with HIV or hepatitis B or C is the worst that can happen to a parent, telling your child about the infection runs a close second.

When should a parent disclose? How should they tell them? What will a child ask? Will they ever forgive the parents who infected them? Are silence and secrecy justified to protect a child from a painful diagnosis?

Two pioneers who have peered into the disclosure cauldron are Lori W. Wiener, coordinator of the Pediatric HIV Psycho-Social Support and Research Program at the National Institutes of Health, and Heidi Haiken, coordinator of Social Work at the Francois Xavier Bagnoud Center in Newark, N.J., an innovative program that works with parents and children with HIV.

For more than 10 years, Haiken and Wiener have worked with hundreds of families infected with and affected by HIV on the emotional and social issues related to the disease. Wiener, who has a PhD, has researched and written about the impact of disclosure on family members.

Their combined experiences have produced two cardinal rules for parents of children infected with chronic, viral infectious diseases:

Never lie. You don’t have to name the disease if children are very young, but never, never lie. The damage to the parent-child relationship will surpass any short-lived benefits gained by deceit.

Disclose as early as you can, especially once kids start asking questions. The longer you wait, the harder it gets and the greater your chance of undermining your child’s trust in you.

“We even tell parents who come to the center that if they don’t tell the kids by the time they reach sexual maturity, we will,” Haiken said. “But of course it’s much, much healthier to have this information come from the parents.”

Both women acknowledge that disclosing is very traumatic for parents. “For some parents, it’s just devastating,” said Haiken. “They feel guilt because they infected the child because of their past sexual behavior or drug use. They feel guilt that the child has to suffer. Even for parents of children who contracted it from transfusions or are adopted, disclosure is extremely difficult.”

Wiener, who has written several research papers on this topic, found the longer parents withheld the diagnosis, the more embedded the lies became and the harder it became to disclose the truth. “Parents often fear that once they disclose new and different information, that their child will no longer trust them,” she said. “Following disclosure, many of these children feel embarrassed that other people in their family have been aware of the diagnosis before they had been informed. Once disclosure takes place, these issues and feelings can be successfully dealt with in individual and group counseling sessions with parents and children.”

Haiken and other social workers at the center work hard to help parents work through their guilt, or at least face it without flinching, before they disclose.

“I tell them you didn’t mean for this to happen, it’s clear you never wanted to hurt your child, look at all the wonderful things you’ve done for your child,” said Haiken. “After a while they get there, they see it, but it’s still very difficult. No parent ever wants to infect her child. It’s something they felt they had no control over.”

In terms of disclosure, parents who are themselves living with HIV have additional challenges to face. They fear disclosing their own life-threatening disease to their children. But generally, says Wiener, by the time children reach ages 6 to 10, they realize the consequence and finality of death. It is useless to shield children this age from the knowledge that their parents have a serious or terminal illness.

The disclosure process, timetable and style are often dictated by the parents’ health. Can they focus on their kids and execute disclosure, or are their own health problems overwhelming? Are they getting the support and time they need or are their own medications, insurance forms and other factors too overwhelming?

“Foster or adoptive parents have the luxury of not having to worry about their own illnesses, so the emotional and financial stress on the entire family may not be as intense,” noted Haiken.

The journey to disclosure begins early, says Wiener. “The child and parent should first have a sense of trust—that is the highest priority.” Disclosure occurs little by little in age-appropriate ways as soon as a child can communicate. Just like talking about adoption, it’s always on the table, though not all the details or medical terms may be exposed just yet.

Ideally, when the parent discloses the conversation should go something like this, suggests Wiener.

“Do you remember when I told you that you had a germ in your blood? That’s why we have blood work done every year. (And) Do you remember I told you that you got the germ from blood? Well, that germ is a virus that is called HIV or hepatitis….”

“You see, the disclosure dialogue is a constant building process,” she said. “If the child asks why the parent didn’t tell them earlier, the parent needs to be able to say, ‘I never lied to you, I told you what was wrong, I just hadn’t told you name of the virus.”

It may take a child weeks, months or years to absorb the diagnosis. “Try to be where the child is at when they ask questions,” wrote Wiener. “Let the child know that no matter how difficult the subject matter, he or she can always ask questions or share feelings. Be careful, however, not to provide more information than the child wants or is prepared for. They may not be ready for a virology discussion.

“You never want to be in the position of telling a 12 year-old about his or her disease that you have never even referred to before,” she added. “That is my main concern in the disclosure process. We’ve interviewed a lot of children who have been disclosed to. Most felt they had been told at the right age and by the right person except those whose parents had a doctor tell them. Those were the only kids who remained upset about the disclosure process.”

At NIH, counselors work intensely with parents of HIV-infected children to prepare them for the disclosure discussion. Social workers even have parents write out what they will tell their children and then play the part of the child in role-play situations. Generally, parents should be prepared to answer the following questions, depending on the child’s age and development. (Some questions apply if the parent is infected also.)

Why did this happen to you?

Where did you get it from?

Are you going to die?

Am I the reason you got sick?

Who else in the family has it?

Why do I have it?

Why don’t (siblings) have it?

Am I going to die?

Will this hurt?

Who else knows I have this?

Who can I tell?

What will happen to me and (siblings)?

Can I get married?

Can I have children?

Here are some general guidelines Wiener has identified for parents to consider as they prepare for the disclosure discussion.

Where do you want to make the disclosure and who should be part of the discussion?

“You don’t want to have a ton of people there, just those whom the child trusts and feels most comfortable with,” cautioned Wiener. “Try to anticipate the child’s response based on his or her emotional age and maturity. Be careful never to disclose when you’re angry, or during an argument. Have the discussion in a safe, comfortable environment.”

What is the most important message you want your child to walk away with from this discussion?

Possibilities include: Nothing is going to change… I am just now giving you the name of the virus… We will always be there for you… I will never lie to you… Nothing you did caused this disease.

How exactly will you disclose the actual diagnosis?

“We have parents write out how they’d like it to happen, and they always start out with, ‘Do you remember?’ Weave in pertinent aspects of the child’s life and pick up the threads of your past discussions about infections,” suggested Wiener. “Rehearse the questions and answers, including ‘How did I get it? Can I get married? Can I have kids? Who else knows about it?’”

If the diagnosis is to be kept secret, who else can the child talk to?

“If parents tell a child not to tell anyone, the first thing a child will do is go tell someone,” said Wiener. “They’ll feel resentful if they have no one to talk to. Parents need to find others in the community for the child to talk to. If there isn’t anyone nearby and the child wants to tell his or her best friend, I would tell them to talk with me, the parent, first. I would explain that not everyone is as educated as we are, and it’s important that we make a plan and educate the friend about this infection first. After all, we don’t want anyone to treat us badly.”

Give child a journal or diary or a way to express their feelings about the infection.

Encourage the child to use art or writing to express feelings. “If HIV had a face, what would it look like? Or start a discussion with, ‘If I had a million dollars, I would get rid of this virus. What would you do with a million dollars?’ Keep those discussions going,” Wiener suggested.

“It is usually not until days or weeks after disclosure that the child has the courage to ask more questions,” she added. However, after finally making the disclosure, some parents feel so relieved and so exhausted from the ordeal that they may not have the emotional energy to talk about it again. This blocks open communication at a time when sharing concerns about the disease and its impact on the family is most important.

If you see any such problems, talk to your child and if necessary, seek help from a social worker or psychotherapist. Remember, disclosure is not a one-time event and a child needs constant reassurance that they did not cause the disease.

Don’t forget siblings in the disclosure process.

Whether or not a sibling is told depends on age, said Wiener. “If the sibling is close in age, I don’t make it a choice, the sibling must be told. But, I do give them a choice of whether the infected child tells the sibling or if the parents tell the sibling. You need to give the child a sense of control. Living with secrets in the home does not promote a healthy emotional climate. I try to minimize the amount of secrets or lying that’s going on. However, if there’s a medical procedure or if they’re on interferon which makes them grouchy, it’s important that siblings know why.”

Even after disclosure is made, the full reality of the diagnosis may not come about for years. “It may not be until someone dies, or they get sick for the first time or they can’t go to a party and drink like everyone else that the reality really sinks in,” said Wiener. “At that point, it becomes an emotional reality, not just an intellectual reality.”

Wiener finds most parents do feel relief after making disclosure. The burden of secrecy is lifted, and children who already intuitively know something is wrong often feel better after they are told of their diagnosis. Siblings, especially if they are older, are also relieved when the veil of secrecy is lifted.

“The demands of keeping the family secret is a heavy burden for a young sibling and may threaten healthy development,” Wiener wrote in a study of siblings of HIV-infected children. “As inquisitive peers begin asking siblings why their brother or sister is sick, it becomes increasingly difficult not to tell the secret. One 9-year-old girl describes: ‘I want to tell people. Right when I almost say it, I remember in my head I’m not allowed to.’”

Resentment of the special treatment given to the sick sibling may cause the healthy sibling to feel less loved, Wiener explained, particularly if no explanation for the preferential treatment is provided.

Heidi Haiken, who has worked with more than 400 HIV-infected kids, has found disclosure to be beneficial to parents and kids alike. “By and large, the kids do well and are glad they’ve been told,” she said.

But disclosure is just a step in the journey. Parents must be prepared to ask, probe and continue the dialogue about health safety, standard precautions, medical treatments, good nutrition and the fundamentals of safer sex with their infected children.

“In our program, we start teaching safer sex at age 10 to 13,” said Haiken. “We give out condoms, talk about masturbation and how to keep yourself and your partner safe. We don’t deny they’re sexual beings, we focus on how to be safe with it, how drugs and alcohol can make you do things that aren’t safe.”

That safer sex discussion is just one more elaboration on the discussion that began when parents tell their infected toddlers never to touch anyone’s “boo-boos.”

Most parents of infected children and teens don’t have a Heidi Haiken or Lori Wiener in their hometowns. And, they can’t count on local schools to teach standard precautions or to delve into the nitty gritty of safer sex procedures. Most parents must be open and honest as they continue these discussions, no matter how painful or awkward, throughout their children’s lives.

When girls first start menstruating, one of the less-talked about side effects is the messiness. A practical mom of an HCV+ teenage girl contacted us to find out just how to deal with potential blood and body fluid exposures in the home and in public areas.

We thought the answers to her questions might serve many families, so we’re posting them here, with thanks to several infection preventionists who pitched in to provide answers!

In no particular order, here are the questions and answers.

Q: What cleaning products can we use to kill the hepatitis C virus?

Hepatitis C is not an easy bug to kill. Store-bought products (such as Lysol®, Clorox® Clean-up® Cleaner with Bleach, or Mr. Clean®) are not effective.

Bleach is questionable with regard to killing HCV. The proper dilution and the state of the HCV will vary the efficacy. If HCV is in a dried state, it is harder to kill than if it’s in a liquid state. With all blood or infected body fluids, the area needs to be physically cleaned first and then disinfected with 1:10 dilution of bleach (one part bleach, 10 parts water), although studies (see references below) are varied on efficacy.

Ethanol in studies does not show efficacy. Hand Hygiene Alcohol MSDS sheets do not list HCV as a bug that is killed by an alcohol hand rinse.

Super Sani-Cloth Wipes to be used on environment, a quaternary in a cloth/wipe form, kills HCV. Although I would like to emphasize that cleaning the environment must occur before any of these products are effective. Clorox® Germicidal Wipes, bleach wipes for the environment, kills HCV.

For any product, the label must be read. If the label states that it kills HCV, then follow the manufacturer’s guidelines with regard to kill time.

For skin that is contaminated with blood, the hands or skin can be cleaned with soap and water. Wet the skin, suds and use friction on the area with soap for 20 seconds or more, and thoroughly rinse the skin with warm water. This is not to kill the virus but an action to rinse the virus off the skin.

Answering these questions was a very useful refresher on bloodborne pathogens. Breaking the chain of infection is key in preventing transmission to others. Each link must be present and in sequential order for an infection to occur. The links are: infectious agent, reservoir, portal of exit from the reservoir, mode of transmission, and portal of entry into a susceptible host.

Q: How does one handle and dispose of soiled sanitary pads, underwear, or tampon applicators? What about the mess that soiled hands leave behind?

There are a variety of products on the market for the disposal of tampons and sanitary napkins (search the internet “products for tampon/sanitary napkin disposal”). The products may have some advantages over a plastic baggie that can be difficult to seal with potentially soiled hands in a restroom stall.

There are towelettes that can kill HCV, but they are not meant for cleaning of skin, just cleaning of surfaces (it takes 3-4 minutes for HCV to be killed on a surface with these products).

Towelettes for hand sanitizing can be used to clean hands prior to leaving the stall— they are available in small packets that can be kept in a purse. Hand washing with soap and water is important before leaving the bathroom, even if towelettes are used to wipe the visible blood off of your fingers, because the towelettes won’t kill HCV, they will just wipe off some of the blood.

When an HCV+ woman is having her menstrual period, she needs to be prepared to dispose of her sanitary napkin/tampon in a way that decreases exposure of her blood to the environment.

When entering a public restroom, she needs to practice procedure that flows from dirty to clean. This means that prior to entering the restroom stall, she needs to have the items to complete this process—napkin/tampon, disposal bag, disinfectant wipes, and hand cleaning wipes.

She should then get the items out of her purse if there is a place/shelf to put them. If there is not a place, then she should at least put them at the top of her purse, so she is not digging around for them when she needs to use them. Next step is to open the items she needs, such as disposal bag.

Remember, if she is in a public restroom with the designated metal disposal box with leak proof bag she does not have to put her napkin/tampon in a separate bag unless it is very soiled and leaky (that is to reduce contamination of the metal box as it is placed in it). The rationale for this is that the special metal containers are meant for everyone’s napkin/tampon, and all items should be treated as potentially infectious, not just one individual’s napkin/tampon.

The restroom cleaning person’s job description to empty and clean that container falls under the OSHA mandate to receive education and training for bloodborne pathogens. They should know how to properly handle this by using proper personal protective equipment.

While she is removing her napkin/tampon, it might be best to use her less dominant hand so she will have her dominant hand with better control to reach for the disposal bag on top of her purse.

If she has any soiled underwear, she should replace it at this time using a separate disposal bag since she will bring it home to wash. After removing and replacing the napkin/tampon, she needs to clean the environment of any visible blood with the disinfectant wipes. Put the used disinfectant wipes in either the special metal box, if available, or the disposal bag that contains her used napkin/tampon.

If she has visible blood on her hands, she should use the hand cleaning wipes. Also, put the used hand wipes in either the special metal box, if available, or the disposal bag that contains her used napkin/tampon.

Once she leaves the stall, she needs to do hand hygiene at the sink with soap and water. Research has shown that we need to pay attention to cleaning our thumbs, between fingers, around our wrist, and our dominant hand. Also, once she is finished with water, soap, and drying her hands, she should use a paper towel to turn off the faucet and to open the bathroom door, since so many people open the door without doing hand hygiene.

As for her soiled clothes, if she is away from home she should remove them and place them in a plastic bag with the intent of removing the items as soon as she gets home. If it will be awhile before she will return home, she might want to add some water to the bag to keep it moist.

Once she is home, she should place the soiled item in a designated bucket to soak. If someone else is handling her soiled clothes, they should wear gloves. Also, remember to not hold the soiled items next to your clothes. If there is excessive blood or blood clots, they should be mechanical removed either with gloved hands or brush. Next step is to spray some stain remover on the area. OxiClean® is one product that works on red stains. Remember to follow the manufacturer’s instructions. For OxiClean®, spray it on the stain until it’s saturated, rub in, and let stand for up to 10 minutes. Do not let OxiClean® dry on fabric.

(Another infection preventionist contributed quite a bit to this answer, but due to her workplace, she asked that we not share her name.)

Q: What precautions should be taken around the house?

Standard precautions (acting under the assumption that all blood and body fluids are potentially infectious) can and should be followed at home, especially for people living with HCV, in order to prevent the transmission of the virus to others.

Casual contact, such as sharing household items (dishes, cups, and glasses) is not a risk. But blood, body fluids, and items that come in contact with blood are possibly infectious.

Cleaning up blood spills and not sharing household grooming equipment (such as razors, nail clippers, and toothbrushes) will keep people and their families safe from HCV and other infections.

LAUNDRY:

Clothes may be washed together with regular detergents

Use gloves when handling any clothes stained with blood, semen, or vaginal fluids

Wash blood-stained items in hot soapy water using one cup of bleach per load

If items cannot go into the wash, wipe them dry and take them to the dry cleaners

Wash contaminated items with hot water and detergent for at least 25 minutes. Presoaking may be required for heavily soiled clothing. The most important factor in laundering clothing contaminated is elimination of potentially infectious agents by soap and hot water.

Per VA Department of Health

PRECAUTIONS FOR BLOOD SPILL CLEAN-UP

When cleaning up blood spills, the following steps are important for preventing the spread of bloodborne infections like HCV:

Wear gloves—torn gloves will not protect the hands from coming into contact with the blood.

Carefully remove any sharp pieces, such as broken glass, and put them in a sturdy plastic container like one used for detergents.

Wipe up the blood using paper towels or disposable rags and cloths.

Disinfect the area with a solution of at 1 part bleach to 9 parts water. [note the difference in solution compared to Cathy’s in the first Q/A – perhaps take your pick?]

Wipe up the bleach solution using paper towels or disposable rags and cloths.

Dispose of the gloves, paper towel, rags and cloths into a durable bag.

(This testimony was given on behalf of PKIDs to a U.S. House of Representatives’ committee a few years ago. It is so compelling—and, unfortunately, still relevant—that we wanted to share it with you now.)

My name is Dr. Keith Van Zandt, and as a practicing family physician, I appreciate the opportunity to address this committee regarding hepatitis B vaccines. I have degrees from Princeton and Wake Forest Universities, and completed residency training in family medicine here in Washington at Andrews AFB.

Today, however, I am here as a dad. I have five children, two of whom my wife Dede and I adopted from Romania. Our youngest, Adrianna, was nearly four years old when we adopted her from the orphanage, and was found to have chronic active hepatitis B when we performed blood work prior to bringing her home.

She had contracted this from her mother, who died when Annie was nine months old, from the effects of her liver disease as well as tuberculosis. We have been very fortunate to have had some excellent medical care for Annie, but her first year with us was an endless procession of liver biopsies, blood draws and over 150 painful interferon injections I gave to my new daughter at home. Interferon is a form of chemotherapy for hepatitis B that has many side effects and only a 25 to 40% success rate.

We know first-hand the pain and family disruption this completely preventable disease can bring.

You have already heard testimony from some of the world’s leading experts on hepatitis B and its vaccine, and I can add little new information to that. As a family doctor, though, I see patients every day whose lives have been significantly improved by the immunizations we now have available. My forebears in family medicine struggled in the pre-vaccination era with the ravages of horrible diseases that are now of only historical interest.

Preventive immunizations have so changed our world that I am afraid that we no longer remember how horrible some of these diseases were. My family and I have made multiple trips to Romania to work in the orphanages, and unfortunately I have seen the effects of many of these diseases there.

I am certainly aware of the potential for adverse reactions to our current vaccines, but we must maintain the perspective that these reactions are extremely rare. My partners and I in Winston-Salem care for over 40,000 patients, and I can honestly say that in over 20 years of practice we have never seen a serious adverse reaction to any vaccine. I believe that the vast majority of family physicians around the country can say the same. Certainly, I do not wish to minimize the suffering and losses of families who have experienced these problems, but we must remember that immunizations remain the most powerful and cost-effective means of preventing disease in the modern era.

Personally, it still sickens me to know that the disease my daughter has was completely preventable if hepatitis B vaccines had been available to Annie and her mother.

Whereas 90% of adults who contract hepatitis B get better, 90% of children under the age of one go on to have chronic disease, and 15 to 20% of them die prematurely of cirrhosis or liver cancer.

I know first-hand the gut-wrenching feeling of being told your child has a chronic disease that could shorter their life. I know first-hand the worry parents feel when their hepatitis B child falls on the playground, and you don’t know if her bleeding knee or bloody nose will infect her playmates or teachers. I know first-hand the concern for my other children’s health, with a 1 in 20 chance of household spread of hepatitis, and the thankfulness I feel that they have had the availability of successful vaccines. I know first-hand the pain a parent feels for their child as they undergo painful shots and procedures for their chronic disease with no guarantee of cure.

I am not the world’s leading expert on hepatitis B or the hep B vaccine, but I am an expert on delivering the best medical care I can to my patients in Winston-Salem, NC. I am also not the world’s leading expert on parenting children with chronic diseases, but I am the world’s best expert on parenting my five children.

I know professionally that immunizations in general have hugely improved the lives of those patients who have entrusted their medical care to me. I know personally that had the hepatitis B vaccine been available to my daughter, her life and mine would have been drastically different. I am also thankful that my other children have been spared Annie’s suffering by being successfully vaccinated.

Anecdotes of vaccine reactions are very moving, but they are no substitute for good science. Please allow me to continue to provide the best medical care I can with the best system of vaccinations in the world, and allow me to keep my own family safe.

Disclaimer

The information on PKIDs' Blog is for educational purposes only and should not be considered to be medical advice. It is not meant to replace the advice of the physician who cares for you or your child. All medical advice and information should be considered to be incomplete without a physical exam, which is not possible without a visit to your doctor.